Monomelic Amyotrophy

[DonH]

ALS Variant?

 

I'm a Vet Wife. I post on behalf of my husband, I'm his note taker at doctor's appointments and consults.  I'm his support system and all around cheerleader. Lord knows we have had our VA battles. All these years after Vietnam, the onset of my husband's emerging illnesses, obviously percolating internally has emerged  one after another. We've seen subtle signs and some not so subtle. But didn't; know what those sign meant. The VA didn't do a very good job of educating the older veterans about what to be aware of regarding SC disabilities,

My veteran husband's a Purple Heart Vietnam Veteran  served in US Marine Corps. My husband  has several service connected disabilities. My husband diagnosed with Monomelic Amyotrophy recently; it is a Motor neuron (MND) disease that is the umbrella covering all type Motor neuron diseases and variants. To which ALS/ Amyotrophic Lateral Sclerosis and variants falling under the same umbrella as being classified as Motor Neuron Disease (MND). As exhibited in cases of muscle loss: Monomelic Atrophy.

ALS causes degeneration of nerve cells in the brain and spinal cord that leads to muscle weakness, muscle atrophy, and spontaneous muscle activity. The VA Doctors pondered whether my husband had ALS or MS. Yet, the Neuromuscular Head Physician conceded that my husband's illnesses was an ALS variant because his illness fell under the umbrella of Motor Neuron Diseases as did ALS......is a Motor Neuron disease. ???? We don't know how VA will decide.

Other complicating issues:

*Spinal issue (S Curve of spine)

*Multi focal motor neuropathy associate with Diabetes 2 is a part of the mix/entwined as well. 

 

However, most severely is the inability of identifying the exact reason for the monomelic atrophy.

Although it was hoped a more exact finding will be determined when all results of updated blood tests were in.

On May 2017: *Blood test are in; determination that no immune diseases are present

Possible treatment of an intravenous treatment once every three months or medications with steroids would be beneficial. No effective treatment available.

 

MMA

Diagnosis. 

Inflammatory Arthritis is Part of the neuropathy (Special kind of neuropathy)

As well as severe spine problems. Very rare complicated illnesses intersecting and exacerbating primary and/or secondary with veteran's service connected disabilities.

 

Monomeric atrophy......Veteran has lost the use of his right hand and right forearm weakened and wasting away.

One limb atrophy

See notes…..described as one limb muscle atrophy

 

Spinal cord (S curve of spinal cord) compression on top on addition the monomeric

 

Toxic agent like Agent Orange could more likely than not" a contributor for neuropathy.

 

Immune diseases (no)

 

Deterioration. Of bones on vertebra

Spondylosis...inflammatory arthritis 

Acts like spinal cord injury 

 

(Findings of EMG) EMG to confirm the diagnosis ( Neuromuscular VA Physician at Michael E. DeBakey VA Medical Center, Houston, Texas)

Table of Rated Disabilities
Disability	Rating	Decision	Related To
Peripheral Neuropathy, Left Lower Extremity		Not Service Connected	Denied as…. early as 2011… Yet, D to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued.
Peripheral Neuropathy, Right Lower Extremity		Not Service Connected	Denied as…. early as 2011…  Yet, ID to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued Agent Orange - Vietnam
Neuropathy, Left Upper Extremity		Not Service Connected	Denied as…. early as 2011…  Yet, ID to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued
Bilateral Hearing Loss (claimed as diminished hearing)	0%	Service Connected
Tinnitus (claimed as ringing in both ears)	10%	Service Connected
headaches		Not Service Connected
depression		Not Service Connected
skeletal arthritis aching of the joints (unspecified)		Not Service Connected	Arthritis denied as…. early as 2015…  Yet, ID to pinpoint as being symptomatic complexity of Monomelic Amyotrophy variant of ALS in 2017….should be cued
post traumatic stress disorder (PTSD, also claimed as depression and anxiety)	30%	Service Connected	PTSD - Combat
Hypertension	0%	Service Connected
Neuropathy, Right Upper Extremity		Rectal carcinoma claimed as rectal cancer, a soft tissue cancer)   Not Service Connected Agent Orange - Vietnam Still on since  12/11/14 appeal Remand 5/15 scar, shrapnel right knee 10% Service Connected   09/18/2013 diabetes mellitus type II 10% Service Connected Agent Orange - Vietnam 07/06/2015 prostate cancer 100% Service Connected Agent Orange - Vietnam 07/06/2015 erectile dysfunction 0% Service Connected   07/06/2015	Neuropathy, Right Upper Extremity Denied as…. early as 2011…  Yet.ID to pinpoint as severe symptomatic complexities of MonomelicAmyotrophy variant of ALS in 2017….should be cued Agent Orange – Vietnam

Edited June 26, 2017 by DonH
adding more details

[Berta]

I found only one BVA case for the Monomelic Amyotrophy, and that was denied.

I found this case that was on a remand:

https://www.va.gov/vetapp11/files1/1100075.txt

"Hiyarama's disease" is also called Monomelic Amyotrophy.

Was your husband  a Gulf War veteran?

The claim contains this very interesting statement:

"Significantly, the RO, in the denial of the Veteran's claim, 
focused on the diagnosis of Hiyarama's disease; however, that 
diagnosis was never actually provided; it was merely suggested as 
a possibility.  As such, it is not altogether clear whether the 
Veteran has a diagnosed disability of the right shoulder to 
account for his symptoms.  In other words, there is no definitive 
diagnosis of Hiyarama's disease, and no definitive diagnosis of 
ALS, or of any other specific disability to account for the 
Veteran's symptoms at this juncture.  A VA examination is 
necessary to determine whether the Veteran is suffering from an 
undiagnosed illness within the meaning of 38 C.F.R. § 3.317. "

Was your husband definitively diagnosed by VA? Or was the diagnosis from hat a doctor said, that was never documented in his medical records ?

Do his medical records reveal no actual definitive diagnosis?

https://www.va.gov/vetapp11/files1/1100075.txt

But the "undiagnosed" illness part of 38 CFR 3.317 only applies to Gulf War veterans.And we have no way of finding out what happened to this BVA case after the RO remand took place.

I think your best bet is to focus on the decision and we can help more if you can attach it here.

 

 

 

[Berta]

I regret I asked about the Gulf War as I read over the first post-------2017---

 

who added the statement  ."should be cued. " to the disability list?

Were any CUEs filed? The EED mght be a CUE. But CUE can only be determined by seeing their decision and the evidence list they used.

 

 

Edited July 23, 2020 by Berta

[DonH]

We didn't file on ALS Variant due to the VA Doctor doing reserved careful  talk.  My Hubby is content with his rating at this point and doesn't want to rock the boat to file on other SC illnesses. He gets stressed and anxious during the filing and follow-up process having to endure being brow beat in proving/justifying your case. He went through Hell  just trying to get  his PTSD increase from 30% to 50%! Trying to get unemployability was pure Hell as well. 

My Hubby wears a Colonoscopy' bag resulting from his rectal cancer operation is 2012; he has lost use of his right hand (He's left-handed); right hand has a deformed shriveled appearance and his right arm has shriveled as well; shuffles when he walks. He receives every 90 day a shot for containing his Prostate Cancer. VA about every 6 months to a year was calling my husband in for an examination to determine whether he was cured from Prostate Cancer and to determine employability status (???). The VA Doctor finally wrote a letter stating that my husband was not going to be cured from Prostate Cancer during his lifetime nor was he employable! 

IMO for the Colorectal Cancer was submitted (Dr. Bash). The determination on the Remand was made too quickly prior to the 90 days to respond with new evidence once the first denial occurs. Our response with the IMO was submitted within the 90 days to respond with new evidence. Yet BVA's responding too quickly on the Remand, caused our new evidence IMO to get crossed in the mail. Our Representative says we have 2 years to still challenge BVA's error. 

No, my husband was not in Gulf War,. He's from the Vietnam War Era, He just turned 78 years old. No Cue's filed at this time.

Edited April 9, 2021 by DonH

[DonH]

Berta,

Question: Do his medical records reveal no actual definitive diagnosis?

Answer: Yes and No. The VA Doctor reports the diagnosis Monomelic Amyotrophy as a Motoneuron diagnosis being under the same Umbrella of Motoneuron conditions/illness just as ALS falls under the Motoneuron Umbrellas as well. No my husband/s records does not state Monomelic Amyotrophy is absolutely ALS; it states it as a variant and over time may develop further into full blown ALS,,,,

Therefore continued careful observation of my husband's deteriorating/atrophy is needed as well any "emerging problems with swallowing".

Yes. It's in my husband's VA Medical Records as I've basically verbatim reported above in my original notes. ALS is a presumptive illness for service condition......Seemingly, there's a body of existing evidence citing a wide variety of causes of  SC.  AO is thought to be one. The VA doctor did voice a good outside IMO doctor who would suffice if we decided to file a claim for Monomelic Amyotrophy being a Motoneuron  Disease falling under the same umbrella of diseases as ALS; therefore being an ALS Variant . 

And so,  the VA doctor did give me the name of a doctor who is astutely precise at writing Outside medical opinions that could define appropriately how the two diseases are related and how Monomelic Amyotroph is a variant of ALS 

The doctor is a Knowledgeable skillful Independent Medical Opinion Doctor who has succeeded at writing this type IMO when necessitated. I briefly spoke with him. The doctor was  familiar with  having written this type IMO previously. He spoke in exasperation of its difficultly; not impossible, thought; but, difficult. We would have to change representation for this particular doctor to write the type IMO needed. My husband nor I desired to change our representation.

I'm planning on presenting this to our representative, again. She works slowly and methodically. I become somewhat impatient at times; but, I don't want to get ahead of her logic. 

 

 

.

 

Edited April 9, 2021 by DonH

[Berta]

"We would have to change representation for this particular doctor to write the type IMO needed. My husband nor I desired to change our representation."

Can you explain that?

I have never heard of needing to change a representative, in order to obtain a strong IMO.

 

 

 

[Berta]

You stated:

"IMO for the Colorectal Cancer was submitted (Dr. Bash). The determination on the Remand was made too quickly prior to the 90 days to respond with new evidence once the first denial occurs. Our response with the IMO was submitted within the 90 days to respond with new evidence. Yet BVA's responding too quickly on the Remand, caused our new evidence IMO to get crossed in the mail. Our Representative says we have 2 years to still challenge BVA's error. "

Do you mean the RO has never acknowledged the IMO????

What does the representative mean as to the 2 year challenge to the BVA "error"?

I have never heard of a  2 year deadline to challenge a BVA error-----

Maybe you posted the remand here- I will try to find it......

Something seems wrong with this whole situation-

My RO completely ignored 2 excellent IMOs  I had from Dr. Bash.I also had a freebee from a neuro and was in Military school and being a civilian ( AMU) the first civilian they had, I had to deal with a lot to maintain my A average from my former college- (Phi Theta Kappa) (those Marine Corps Professor are TOUGH!!!!!

and didnt have time to deal with the RO- who had committed a CUE- I knew the BVA would award.

The BVA awarded but had remanded the claim first for a  VA cardio opinion.I got a PA opinion and rebutteed it myself telling the BVA it was far too speculative. BVA agreed and then they made the award.

I bring this up because -long story- my state vet reps had apparently never even seen an IMO before- one said he presented it to the DRO because I did CUE them for a double DRO review but I got the same DRO at the double review and my vet rep said he handed the IMos to her personally but she said she couldnt read them and handed them back to him.Longer story-state reps have a Boss= the Governor, and the OGC. They state reps kept telling me my VCAA letter was proper-the director was removed suddenly after I contacted the Governor. The reps I had who didnt have a clue  no longer wok for NYS Div of Vets Affairs

BVA agreed that my VCAA letter was in violation of the VCAA,but my evidence mitigated the damage of that, and they awarded.

Is your Representative the same Agent you had before as I understood the past thread-

 

Did Dr Bash address the 1151 potential I mentioned to you in around 2017?

Was the actual colon cancer ever diagnosed as Non Hodgkin's lymphoma?

I will try to find your BVA decision if you posted it here.